Kristy Tanquist’s son Mitchell is five years old and attends half-day kindergarten. He has an older sister Megan, age eight. Mitchell sees a neurologist, urologist, orthopedic physician, and rehabilitation physician, who are very involved with his activities. He sees them every six months, unless the Tanquists have concerns before that time. He has physical therapy once a week. The Tanquists also plan to include swimming once a month.
Mitchell wears AFOs and uses a walker most of the time, but also has Lofstrand forearm crutches. “Our goal is to get him to use one Lofstrand to get around, but we know this will take some time,” Tanquist says. Mitchell also sometimes uses a wheelchair.
Mitchell’s biggest challenges, according to his mother, have been dealing with and recovering from surgeries, mobility and accomplishing daily tasks, adapting to the bathroom schedule at home and at school, being unable to play ball, skateboard, and other activities with friends, and accepting that he is different from his family and friends.
For the Tanquists, a big challenge is “the frustration with wanting to provide a ‘normal,’ unlimited life for our child and being unable to do that.”
Tanquist also lists other challenges, many of which are often faced by parents of children with SB:
- Not knowing when certain ailments or conditions are “normal kid stuff” versus symptoms of more critical, SB-related issues.
- Not knowing his capabilities in order to know when to push him to do things on his own versus doing it for him all the time.
- Not knowing the resources and assistance that are available; learning about them, and then figuring out how they all work, such as the Tax Equity and Fiscal Responsibility Act (TEFRA), which provides healthcare assistance for families with disabled children who qualify.
- Figuring out the right equipment to get—braces, bicycles, etc.
- Paying too much attention to his needs and feeling like we’re neglecting our daughter.
- Being unable to leave him with a regular baby-sitter for extended periods because of bathroom issues.
- Having to become medical experts in order manage and direct his overall care. He sees so many specialists, and specialists always want to do what they know to address certain issues. For example, when he had stridor, the ENT wanted to insert a trache, but the neurologist wanted to decompress. It was left to us to decide.
- All of his therapy and medical appointments basically preclude one of us from working. Our income is too high to qualify for assistance and too low to hire help on our own.
Support Group Benefits
Belonging to a support group has helped the Tanquists see that “we are not the only ones going through this. It’s been a great help knowing what others have done, and knowing we can make it through some of these difficult choices.” They are also planning to join the Spina Bifida Association (SBA) Minnesota chapter (www.sbamn.com) again this year, Tanquist said.